A healing journey as my body goes through topical steroid withdrawal

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“Some things in life cannot be fixed. They can only be carried.” Amen.

Grief, pain and endurance of this illness, in and of itself, has not and will not make me a better person. I am not destined to go through this so that I can help other people, this path is not divinely ordained.

I am indeed weary of these platitudes, sometimes expressed by well meaning loved ones and sometimes flippantly thrown at me by spiritually enlightened strangers.

These last two weeks have had me in emotional turmoil. I am grieving my loss of freedom. I am lamenting two years of horrific pain and trauma living in my own skin. I am devastated by the reality that despite all of my efforts I am confronted with more of the same. I have spent sleepless nights begging for the opportunity to live again – to move, work and play with ease and lightheartedness. I have spent exhausted days wanting to die.

Will I grow as a person from this experience? Maybe, maybe not. If anything I feel intensely jealous, more selfish, less grateful, more anxious, less empathetic to triviality. I am fairly sure that once physically healed I have extensive work to do just to return to the semblance of the functioning person I was before.

I am grateful for the wonderful, loving people in my life but I am not grateful for this experience. This journey – it is what it is, but it is not meant to be.

I don’t want to write this update. I haven’t been around at all the last six months, waiting to come back and tell you all I am finally clear of this beast. The reality is not kind.

I am sitting here with my face a giant open wound. Weeping to all hell – pouring off me. It started at work today and I can’t establish a cause. It’s been happening every few weeks for the last few months. Probiotics is one trigger I have identified but haven’t touched them for two months. I don’t cope well when I’m like this. I tend to randomly panic and cannot be left alone.

My skin has been flaring badly since March. I have been in a lot of pain and discomfort again. Swinging between mild optimism interspersed with flecks of determination to debilitating depression.

Below is a list of symptoms I still get vs the first few months when flaring was also bad. I’ve probably missed some symptoms. Remind me and I’ll add them in. You know – things like our brains don’t function properly, no memory retention or ability to concentrate – stuff like that. I won’t post any photo’s because looking in the mirror is hard enough, so I’ll save us the distress.

Sending you all love,

Ruby Red

SYMPTOM

FIRST SIX MONTHS

MONTH 18-24

Burning red skin

On fire. Burning hot to touch, painful and very swollen. Rising prickly heat in body regularly. Didn’t want to be touched. Visibly look super red like a tomato a lot of the time and non stop for first 5 weeks. Cannot tolerate direct sunlight at all.

Inflammation visible with flares but burning sensation not very noticeable. Only face goes super red and subsides after a few hours. Skin not burning hot to the touch. Can still feel a chinese burn sensation when moving, stretching out limbs etc Cannot tolerate direct sunlight at all on face. Other parts of body can take some sun.

Working on my feet all day – so oedema at end of day – sore lower legs and ankles. Swelling subsides almost completely after a day of being horizontal. Swollen face, skin cracks with swelling on cheeks. One lymph node permanently rock hard. Swelling in others comes and goes but aren’t that painful.

Still don’t want people near my face when flaring but can cope fine with rest of body. Sensitivity to outside stimulation is more normal and not too painful. No more electric shocks. Getting dressed is tough somedays but I manage.

Itching

Ok for first couple of months then insane as the burning inflamed skin subsided. Used antihistamines, herbs and “failsafe diet” to help get under control.

Bad but not insane 99% of the time. Still use herbs and diet to control but have not used antihistamines for 4 months. (not sure I am an idiot for foregoing these but trying to stabilise mast cells)

Temperature dysregulation

Shakes & chills. Flu – like symptoms. Buring hot to touch and feel ilke my skin is on fire but swing between icy cold/can’t get warm to rising prickly heat on the inside. Need ice packs constantly and need to stand in front of air con to cool down. No sweating.

Fine. Don’t cope well in heat or poorly ventilated areas (eg hot car). This can trigger a panic attack but mostly ok. Have regained some ability to sweat.

Weeping skin

Ears constantly weeping. Eyelids and lips very swollen and sore – have to soak them open. Wounds on face that weep but in distinct areas. Wet wounds also on arms, breasts, shoulders, legs. Cannot heal these wounds. Wounds above knee and inside calves are the worst.

Face and neck is a giant weeping wound every few weeks. No distinct area. Worst it has been in entire two years. Serous exodate pours off me. Includes nose which to this point has remained unaffected. No wet wounds on limbs, torso. Hands/fingers cracked sore and swollen.

Insomnia

Didn’t sleep much but after Month 1 I wasn’t working so could rest as much as needed. Used polaramine and dyphenhydramine to knock myself out. Only sleep on couch and able to fall asleep on my left side and slightly upright.

Emotional wreck because I can’t sleep when flaring and I have to work 6 days. Not taking sedatives or antihistamines which has left my body floored with exhaustion. Can’t sleep a wink when my face is oozing. Sleep partly sitting upright on back. Can’t have face on pillow at all. Don’t want partner in bed with me again.

Suicidal, not coping well. Along with with weeping wounds on face this has been the only symptom to get progressively worse.

Anxiety

Regular/daily panic attacks. High overall anxiety

High anxiety with weeping facial wounds. Mostly under control at other times but may be due to controlling my environment as much as possible as well as calming herbs that I take daily.

Stinging skin/tiny cuts etc

Bad. Everything felt like lemon juice in a paper cut. Water felt like acid.

Manageable. Acrylic nails have been a huge help to keep skin barrier in tact – no small cuts. I have recently taken nails off due to being paranoid about their role in flares – small cuts returning but pain is only half of the first six months.

Overall Pain

8+/10. Blacked out briefly/on verge of fainting in shower due to pain a few times. No reprieve from pain. Can’t even describe the totality of it.

Sorry for the ridiculously long time between updates. Partly because life is busy but partly as I have also been avoiding reading about, talking about and being around tsw in general. I apologise if that sounds selfish but it has been the way I have been coping and getting on with my life.

The anxiety is much less, skin shedding much less, I don’t really experience pain on the skin day to day and I have zero nerve issues/pain. Showers are only hurting my face these days. Some days I barely itch and some nights it still drives me insane.

For those of you just starting your journey, it does get better. I still have moments when I think I can’t cope but they last minutes and not days on end. Do whatever you need to get through the day.

Here is a link that explains the diet I talk about in the video. I followed it for nine months whilst still using topical steroids (because even then I noticed how it got rid of the dreaded itching!) and then the first seven months of TSW. I have now incorporated a much larger range of foods into my diet but the base of my diet is still formed by the failsafe foods.

I feel so much better on the inside now! The outside still looks dry and patchy but it is not burning, red or inflamed in anyway. I get itchy if I sweat so I still exercise with breaks in between to avoid sweating but other than that I am living pretty normally! Here’s a video update letting you know how I am going.